Date of Award


Degree Type


Degree Name

Master of Arts (MA)




Spina bifida (SB) is a congenital birth defect that may involve physical, medical, and neuropsychological complications due to central nervous system malformation (Copp et al., 2015). Ambulation problems, bladder and bowel dysfunction, and hydrocephalus require daily medical management tasks, including catheterization, bowel program management, and skin checks to avoid secondary complications. While self-management skills are typically gained during adolescence, executive dysfunction in SB may complicate gains (Dennis et al., 2006; Greenley, 2010). Indeed, evidence in other chronic conditions suggests that adolescent executive dysfunction is linked to poorer medical self-management. Condition-related knowledge has been identified as an important basis of medical self-management, as it involves condition etiology, awareness of potential complications, and a grasp of functional limitations (Greenley et al., 2006; Lansing & Berg, 2014). Little is known about condition-related knowledge growth in SB, and its associations with executive dysfunction and SB-related skills. Therefore, the current study examined (1) the average trajectory of growth in condition-related knowledge in youth with SB, (2) executive functioning variables as predictors of growth in condition-related knowledge, (3) growth in condition-related knowledge as a predictor of medical self-management skills in adolescence, and (4) the mediating role of SB condition-related knowledge on associations between executive dysfunction and medical self-management skills. Participants (n = 140 youth with SB) were recruited as part of a larger longitudinal study (Holmbeck & Devine, 2010). The current study included youth report of condition-related knowledge and medical self-management skills. Youth attention and executive functioning was assessed via parent- and teacher-report and performance-based assessment. Youth condition-related knowledge increased in a linear manner over time. While performance did not predict growth in condition-related knowledge, better youth performance on working memory and attention tasks predicted a higher intercept for condition-related knowledge at T1. Teacher report of inattention was predictive of a lower intercept for condition-related knowledge at T1, but an increased slope of knowledge growth. Teacher report of executive dysfunction was predictive of a higher intercept for condition-related knowledge and a lower trajectory of growth. Parent report of inattention and executive dysfunction were not predictive of youth condition-related knowledge intercept or slope. Slope of condition-related knowledge was predictive of youth self-management skills. Condition-related knowledge partially mediated the association between youth attention, parent- and teacher-reported youth inattention, and parent-reported executive dysfunction, with variable directionality. Results indicate that youth with SB gain condition-related knowledge over time. However, executive dysfunction may impede gains in condition-related knowledge and may benefit from developmentally appropriate intervention. Condition-related knowledge partially mediates the association between some aspects of executive dysfunction and medical self-management skills. Executive functioning supports and psychoeducation programs may be mechanisms for intervention, though further research assessing family and cultural factors is needed.

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Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.